DIY innovation in the hospital

My grandfather, Frank H.J. Figge, was a cancer researcher who faced shortages during World War II and had to improvise to keep his lab going. When he ran short of quartz lenses he remembered hearing that plastic also transmits ultraviolet rays and filled synthetic sausage casings with water to create a perfect — much cheaper — substitute.

Nurses have historically improvised equipment when they had to, using butcher paper to make a bedpan or a rocking chair and roller skates to build a wheelchair. Although nurses’ contributions to innovation have gone unrecognized for years “nursing has a rich tradition of making — one that has produced numerous devices and tools that created a direct path to improved patient outcomes.”

More recently, people living with diabetes have used open source software to link off-the-shelf insulin pumps and continuous glucose monitors to simulate a working pancreas, sharing their designs online so others can benefit.

People are experimenting, creating, and sharing their prototypes, gaining feedback and followers to improve their work and expand the market for it. As the Chief Technology Officer at the U.S. Department of Health and Human Services, I brought entrepreneurs and health hackers into our work in the federal government because I believe that we must build an “innovation nation” that combines our old-fashioned, can-do spirit with newfangled technology.

That’s why I was excited to interview Tiffany Kelley and Anna Young on March 16 at the Lemelson Center.

Tiffany Kelley is a nurse who saw her colleagues writing details about patients on scraps of paper, Post-its, and even paper towels throughout their shifts. The nurses would then verbally relay this vital information at shift changes, introducing an unnecessary risk of forgetting a detail or misreading a scribbled, smudged note. She decided to bridge this communication gap with a nurse-focused app called Know My Patient.

Anna Young helped build the first makerspace in a hospital, at the University of Texas Medical Branch in Galveston, where nurses are given the tools they need to prototype and build solutions to clinical challenges.

For example, Jason Sheaffer is a burn unit nurse who built a portable shower unit with 3 adjustable heads in the hospital’s makerspace. He was inspired by the challenge of treating a victim of a chemical burn, when three nurses worked together for hours, spraying water as best they could, irrigating the skin. It was exhausting and inefficient. Now, with this invention, nurses can direct the nozzles where the water is needed and be free to care for the patient in other ways.

Here’s what I see in the landscape:

  • Barriers to entry are being lowered in communications, design capabilities, and manufacturing.
  • Collaboration across time and space is now possible.
  • Crowdfunding is now possible.

What will happen when everyone has access to the tools and information they need to solve their own problems — and share their ideas with others?

(Learn more about the March 16 event, including background on the participants and tweets from audience members: Nurses are engines for innovation.)

EVENT: Nurses in the Smithsonian spotlight on March 16

Exterior of the National Museum of American History in Washington, DC, with the Washington Monument in the background

Smithsonian National Museum of American History in Washington, DC

The people best suited to solve a problem are often those experiencing it.

Experimentation — and documentation — should be part of everyone’s toolbox, no matter where you sit in an organization or hierarchy.

Prototypes should be shared, not hidden away. Early feedback is golden.

Everyone is a potential innovator.

I’m excited to explore these themes and more with Tiffany Kelley, founder of Nightingale Apps, and Anna Young, co-founder and CEO of MakerHealth at an event on Thursday, March 16, in Washington, DC. The Smithsonian Lemelson Center for the Study of Invention and Innovation will host us at the National Museum of American History as part of their ongoing Innovative Lives series: “A Dialogue on Healthcare Innovation.”

We will tap into Tiffany and Anna’s unique experiences to talk about how nurses are engines for innovation in both hardware and software. They both have stories to tell about nurses who overcame barriers to drive improvements in care delivery and they will share their tips for inventors who face similar challenges in other industries.

To learn more, check out Anna’s TEDMED talk or read an article she co-wrote: “A History of Nurse Making and Stealth Innovation“:

Here is a short introduction to Nightingale Apps, Tiffany’s company:

Tiffany has also written a book, Electronic Records for Quality Nursing and Health Care, which lays out the particular challenges and opportunities for data and its role in clinical decision-making.

I hope this event will be a convening for the local health maker/hacker/informatics community, so please spread the word and register to join us on March 16.

“His doctors were stumped. Then he took over.”

How might we empower people to participate in research about their own diseases or conditions?

Which models work best for organizations solving medical mysteries or improving care for those living with rare conditions?

These are two of the questions raised by a New York Times story today: “His doctors were stumped. Then he took over,” by Katie Thomas about David Fajgenbaum, MD, and his quest to solve the mystery of Castleman disease.

New York Times Sunday Business story on Feb. 5, 2017: Doctor, Cure Thyself

Here is the section that jumped out at me:

In medical research, discoveries come slowly and take twists and turns that no one saw coming. Seasoned researchers have learned to rein in their optimism and to know that true breakthroughs can take years, if not decades, to realize. Not Dr. Fajgenbaum.

“I almost wish that every disease had a David to be a part of the charge,” said Dr. Mary Jo Lechowicz, a professor at the Emory University School of Medicine, who has studied Castleman disease and serves on the network’s advisory board.

Dr. Fajgenbaum’s single-minded mission to take on his own disease is also typical of the rare-disease world, said Max Bronstein, the chief advocacy and science policy officer at the EveryLife Foundation for Rare Diseases in Novato, Calif.

“A lot of mom-and-pop patient organizations emerge to take on these huge challenges in rare diseases,” he said. “I don’t think there’s one correct model for each disease; there’s been so many different approaches.”

Who does David remind you of? That’s the first question that I’d love to see discussed in the comments below. The people who sprang to my mind:

Again, let’s discuss: How might we empower more people to become active, expert participants in research about their (or a loved one’s) disease or condition? What are the factors that lead to someone’s empowerment?

The extra advantage that David has, as pointed out in the story, is his MD and affiliation with Penn. An interesting study might be to show the differences between organizations with medical professionals leading it vs. those with the “honorary PhD” that rare disease patients and caregivers often earn.

Another aspect I’d love to hear more perspectives on: The relative advantages of the different models of organizations. Three models comes to my mind: The “mom-and-pop” nonprofit vs. those sited at an academic institution vs. one that is corporate-backed, for example. Alternatively: Models for change also take different paths, such as community-building vs. data- or specimen-collection as the primary focus.

By the way, if you are new to these questions: Welcome! Some background:

Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual’s health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care.

If you’re ready to dive in, I’m sure there are other questions to discuss beyond the ones I list above. Please join the conversation on Medium or post a comment below.

What do you keep nearby, to inspire you?

Silver wind-up robot

Tom Ferguson, MD, gave me this robot in 2002, part of the first (and only?) fourth class of awardees of the Ferguson Report Distinguished Achievement Awards. I have kept it on or near my desk ever since.

Reading Tom’s old essays, even as far back as the 1970s, is humbling. He foresaw so much of the world we live in now. I owe him a great debt since part of his vision was to see something in me that I didn’t yet see in myself. He believed in me.

Here is the introduction to the e-patient “white paper” (PDF) he was writing at the time of his death in 2006, which explains his attachment to robots:

DocTom 1948 robotI collect old toy robots. My Atomic Robot Man robot (Japan, 1948), shown [at right], is a personal favorite. For many years I didn’t understand the powerful hold these dented little metal men maintained on my imagination. One day I finally got it: They show us how the culture of the 40s and 50s imagined the future. Cast-metal humanoid automatons would do the work previously supplied by human labor.

That wasn’t how things turned out, of course. By making more powerful and productive forms of work possible, our changing technologies made older forms of work unnecessary. So instead of millions of humanoid robots laboring in our factories, we have millions of information workers sitting at computers. We didn’t just automate our earlier forms of work. It was the underlying nature of work itself that changed.

In much the same way, we’ve been projecting the implicit assumptions of our familiar 20th Century medical model onto our unknown healthcare future, assuming that the healthcare of 2030, 2040, and 2050 will be much the same as that of 1960, 1970, and 1980. But bringing healthcare into the new century will not be merely a matter of automating or upgrading our existing clinical processes. We can’t just automate earlier forms of medical practice. The underlying nature of healthcare itself must change.

This is not some technoromantic vision of an impossibly idealist future. It is already happening. The changes are all around us. As we will see, the roles of physicians and patients are already changing. And our sophisticated new medical technologies are making much of what the physicians of the 1950s, 1960s, and 1970s thought of as practicing medicine unnecessary. Financial constraints are making the old-fashioned physician’s role unsustainable. And millions of knowledge workers are emerging as unexpected healthcare heroes.

When they, or a loved one, become ill, they turn into e-patients—citizens with health concerns who use the Internet as a health resource, studying up on their own diseases (and those of friends and family members), finding better treatment centers and insisting on better care, providing other patients with invaluable medical assistance and support, and increasingly serving as important collaborators and advisors for their clinicians.

We understand that this document may raise more questions then it answers. And while we are by no means ready to dot all the Is or cross all the Ts, we strongly suspect that the principal protagonist of our next-generation healthcare system will not be a computerized doctor, but a well-wired patient. Yet our formal healthcare system has done little to recognize their accomplishments, to take advantage of the new abilities, or to adapt itself to their changing needs.

Turning our attention to this promising and fertile area—which to date has somehow remained off the radar screens of most health policymakers, medical professionals, federal and state health officials, and other healthcare stakeholders—may be the most important step we can take toward the widely-shared goal of developing a sustainable healthcare system that meets the needs of all our citizens. But as the battered little robot beside my computer constantly reminds me, we are in the early stages of this process. And our current and future new technologies may change the nature of healthcare in ways we can, as yet, only vaguely imagine.

As MIT’s Sherry Turkle has suggested, instead of asking how these new technologies can help us make the familiar processes of medical care more efficient and effective, we should ask ourselves how these new technologies are “…changing the ways we deal with one another, raise our children, and think about ourselves? How are they changing our fundamental notions of who we are and what we need to do and who we should do it for? What new doors are they opening for us?”

The key question we must ask, Turkle suggests, “…is not what technology will be like in the future, but rather, what will we be like…” when we have learned to live and work appropriately within the new technocultural environments even now being created by our new technologies. For the healthcare of the future—if it is to survive—will be as novel and unexpected to those of us trained as clinicians in 20th Century medicine as today’s computer-toting knowledge workers would have been to the social planners of the 1940s and 50s. We hope that the chapters that follow provide our readers with some interesting and useful perspectives on these questions.

If you have not yet read the full paper, I highly recommend it.

I would love to hear reactions to Tom’s essay. And I’d love to hear what you keep nearby, to inspire you. Please share in the comments.

The White House Conference on Aging

Lawn sign in front of the White House announcing the Conference on Aging July 13

The White House Conference on Aging only happens once every ten years — and it’s happening tomorrow.

The program begins at 10 a.m. ET on Monday, July 13, and will be livestreamed: https://www.whitehouse.gov/live

I’ll be on a panel in the late afternoon talking about technology and the future of aging, directly after Tim Brown and Barbara Beskind discuss universal design. (Read this Wall Street Journal article about some of Beskind’s ideas.) Continue reading

Champions of Change

Secretary Burwell and 9 White House Champions of Change

From left to right: Howard Look, Anish Sebastian, Amy Gleason, Hugo Campos, HHS Secretary Sylvia Burwell, Amanda Haddock, Emily Kramer-Golinkoff, Marcia Boyle, Dorothy Reed, Elizabeth Gross Cohn.

 

Nine Precision Medicine “Champions of Change” were honored at a White House event on Wednesday, July 8. I count everyone in that picture as a community colleague — and some as dear friends.

My role at the event was to moderate a discussion with four of the Champions: Amy Gleason, Anish Sebastian, Hugo Campos, and Howard Look.

In my introduction to the panel, I talked about how this was a panel about data liberation. These four Champions demonstrate how essential it is for individuals to have access to their data, to lift the false boundary between home and clinical care, and to allow patient autonomy to flourish. Continue reading

Flashback to the Future

One year ago this week I was in Sweden to deliver a talk at Almedalen, a festival of ideas held on the island of Gotland.

This year, my community colleague John Nosta brought the latest in American ingenuity to the same event, telling the crowd that digital health is not a far-off promise, but instead simply requires the implementation of technology that exists today. I’ll update this post when The video of his talk is up and you can check out his tweets.

Two essays I wrote about my own trip:

The comments alone are worth a click — fascinating conversations about interoperability of health IT systems, collectivism, equity, and value networks. The conversation is never over, so please post new questions and comments if you see something that inspires you!

Parkinson’s For One Day

My new job is wonderfully immersive. I leave home early, come back late, and, in between, spend hours talking with people about the future of health, health care, and technology (broadly defined). The HHS IDEA Lab blog will be my outlet for sharing ideas related to the work I do there. This site will serve, as it always has, as a sandbox and outboard memory — the beginnings and middles of ideas, not always the polished ends.

For example:

One week ago I participated in an empathy exercise organized by Smart Patients: Parkinson’s For One Day.

My partner was Gretchen Church, co-founder of Movers & Shakers, a national Parkinson Disease support and advocacy organization. She and I talked for about an hour on Friday night and she started sharing pictures on Twitter, like this shot of her medications:

Pill bottles

I wore a 10-lb. weight around my right ankle and, at Gretchen’s suggestion, a high heel shoe on my right foot and a sneaker on my left. In this way I had to be aware of my gait and balance. Plus she assigned my two sons a job: to say “Freeze” randomly throughout the day. I would have to stop in my tracks for at least 30 seconds. This would mimic the challenge that people with Parkinson’s have, particularly when crossing the street. Continue reading

Troublemaker vs. Rebel

List of attributes: troublemaker vs rebel by Lois KellyI adore this slide that Wendy Sue Swanson, MD, captured during a presentation by Helen Bevan. The list was formulated by Lois Kelly and I highly recommend exploring her site: Foghound.com.

The word pair that resonates most with me is “alienate vs. attract,” possibly because it reminds me of my grandmother‘s advice: You catch more bees with honey than with vinegar. How about you? What resonates?

Quantified Self Public Health

Quantified Self Public Health is back! 150+ health geeks of many stripes will gather on Thursday, May 14, in San Diego to discuss how access to personal data could benefit individuals and society.

It is an invite-only meeting (sorry!) but filled with voracious documentarians like Joyce Lee (read her Storify from last year) and, well, me (read my round-up post, which also links to others’ blogs). Follow the tweets on the #QSPH hashtag, too.

Observations and conclusions from last year’s QSPH event were captured in an in-depth report (PDF) and in a series of videos. Here is one of my favorites: Ian Eslick’s talk on the role of personal experimentation in the medical and scientific process:

This year it will be my privilege to interview Don Norman, a design pioneer, on stage.

To prepare, I’ve been reading sections of his books, The Design of Everyday Things and Emotional Design, and watching talks like this one:

I was struck by three themes of Norman’s approach:

1) Solve the correct problem.

My reaction: Boy, does health care need to grok this point. I can’t wait to ask him how to recognize when you’ve dug deep enough into the roots — and what tools to use to get there.

2) Pleasant, attractive things work better.

Reminds me of Michael Graves’s tart review of his hospital room: “I can’t die here. It’s too ugly.” And then he went on to make hospital rooms more beautiful and functional.

3) There is no substitute for direct observation of and interaction with the people who will be using the product.

Yes! I couldn’t agree more. Participatory research *must* come to health care.

Read the full quote from Chapter 6 of The Design of Everyday Things, and, as a thought experiment, substitute “natives” for “patients”:

Don

This point reminds me of conversations I’ve had with people who design communications for HIV clinical trials. They need to use “one voice with many inflections” — that is, one set of facts, but tailored to the population they are targeting, such as sex workers in Thailand vs. Peru.

Switching gears…

A key element of the QSPH meeting is that it will be populated by toolmakers and tinkerers. People who make and hack their way to insights about health. So I’m also reading Mark Hatch’s book, The Maker Movement Manifesto.Book cover: The Maker Movement Manifesto

One of my recent obsessions is the health innovation that is happening at home — the hacks, tips, and tricks that regular people invent to make their lives better. Some are simple, like using a baker’s spatula to turn a large person in bed or sticking a pen through a tennis ball so someone with low dexterity can write. Some are more complicated, like the Do-It-Yourself-Pancreas-System or the Auvi-Q epinephrine injector (both created by people living with the conditions being addressed).

How might we harness the energy of all the people who are making a way out of no way, every day, in health care (that is, patients and their loved ones)? How might we empower them with data and resources? How might we learn from them, and them from us?

Please let me know if you have a question for Don Norman. I know our time will go very quickly, but I want to squeeze as much as I can into the conversation!